Helen remembers her first period as abnormally painful and heavy. She was 13 then, and now she’s 36 and has the same symptoms — only the pain has intensified. “It took me 20 years to finally be taken seriously,” she says. She received her suspected adenomyosis diagnosis during a laparoscopy in June.
In the lead-up to a period, she feels a pulling ache in her pelvic region, followed by contraction pains often compared to childbirth by people who have adenomyosis. Helen also feels nauseated and faint. “I don’t work at the moment, I am studying, but I wouldn’t be able to work full-time due to unbearable pain a few days a month that I would have to call in sick,” she says.
Fortunately, her family and boyfriend are understanding and supportive, though many people with adenomyosis struggle to make their needs understood.
Excision surgeon Nicholas Fogelson explains that adenomyosis, often wrongly described as “endometriosis of the womb,” is actually a condition where endometrial glands, which usually line the inner skin of the uterus, grow within the muscular walls of the uterus. It does often exist alongside endometriosis, but it is not the same condition.
“These endometrial glands bleed or become inflamed during menstruation, creating inflammation throughout the entire uterine wall,” Fogelson says. “This causes severe uterine pain, back pain and cramping and may also cause rectal and/or bladder pain.”
There are two different types of adenomyosis. “The more common type is prevalent in women who have had multiple children,” he explains. “The presumed mechanism is that after the placenta detaches from the uterine wall after a birth, there is a defect in the muscular wall of the uterus, almost like a pothole in an asphalt street. As the new endometrium grows in to fill this defect, some of the endometrium grows into the muscle wall, causing adenomyosis.
“There is a second type of adenomyosis that we see in women who have not had children, referred to as congenital adenomyosis. This looks and behaves similar to the other type but probably occurs because of a defect in embryogenesis (the formation of the woman in very early development) that leads to endometrial glands within the uterine wall.”
Armed with a basic understanding of what adenomyosis is, what can people who have this condition do about it? To reduce painful bleeding, Fogelson recommends birth control pills, progesterone, the coil and other hormones. “Ancillary treatments like acupuncture have also been reported to help by some patients,” he says.
Long-term, the best way to completely resolve this problem is to undergo a hysterectomy, though this is not a viable option for those who still want to have children. “For women who have not completed their family and who are trying to get pregnant, in some cases we perform a presacral neurectomy, which removes the sensory nerves from the uterus,” Fogelson says. “This is an advanced laparoscopic procedure that is performed by only a few surgeons, and it has risks and benefits that need to be discussed for each individual case.”
“Apparently, the stage of my adenomyosis at present wouldn’t affect my fertility,” says Helen, “but [my surgeon] recommended that if I do want children, then it must be within the next year as the condition will get progressively worse and could then affect my fertility.” Though Helen is not yet ready for a hysterectomy, it is something she’s considering for the future, if her symptoms become intolerable
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